Progressive Multiple Sclerosis and incontinence:

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Progressive Multiple Sclerosis and incontinence: A survey study of the patients’ perspective on symptoms and impact Nikki Cotterill1, Carole Copestake2, Iain Weir3, Marcus Drake1, Christine Norton4, Alastair Wilkins2 1. Bristol Urological Institute 2. North Bristol NHS Trust 3. University of the West of England 4. King’s College This project was funded by an MS Society Junior Fellowship award BACKGROUND Approximately 107,000 people in the UK have a diagnosis of Multiple Sclerosis. Associated bladder and bowel problems are common. Accurate data regarding severity of MS and incontinence is lacking. RECRUITMENT Four week survey study. Eight UK Neurology centres. MS Society website. June 2014 to December 2015. Inclusion criteria: 18 years or older Diagnosis of primary/secondary progressive MS Symptomatic urinary (UI) and/or anal incontinence (AI) Ability to complete questionnaires QUESTIONNAIRES Self-report questionnaire Area of evaluation ICIQ-UI Short Form UI symptoms ICIQ-B AI symptoms and impact on QoL FAMS Functional assessment of MS ICIQ-LUTSqol Impact on QoL from UI ICIQ-F/MLUTSsex Gender-specific sexual matters EQ-5D-3L Generic profile of health status RESULTS 200 participants (153 females, 47 males) FAMS domain Mean score (SD, range) Overall score 86.0 (29.5, 25-165) Symptoms 17.0 (6.1, 2-28) Emotional well-being 15.5 (7.2, 0-28) Family/social wellbeing 17.7 (6.4, 0-28) AI/FI Reported symptom (%,n) Overall 97% FI (flatus excluded) 79% Frequent flatus 65% Frequent liquid stool 42% Frequent solid stool 31% UI Reported symptom (%,n) Overall 92% Severe/very severe 41% Frequent 53% Combined UI/AI 81% CONCLUSIONS Varying severity of MS symptoms reported with moderate impact on daily function. Incontinence levels are reportedly high in both severity and frequency. Bladder and bowel continence difficulties often occur in combination. Clinicians should actively enquire about all incontinence regardless of disease severity or gender.